We need a culture change!

Over the last week or so, the Learning Disability Care and Support sector has not been covered in glory. The tragic and avoidable death of Richard Handley has hit the news, the abuse at Mendip House has come under the spotlight again, and events in West Sussex continue to be of public interest. In addition, the Charity Sector as a whole is facing public anger regarding the dreadful abuse of vulnerable people by Oxfam workers, and the Charity Commission’s ability to regulate is being questioned.
It seems the sector doesn’t need programmes like Silent Witness to damage public perception of us; we’re managing this all on our own!

How can this happen? How can truth sometimes be as awful as fiction, and how can there be an environment where it becomes usual to accept or perpetrate abuse, or not to notice, or care sufficiently to put an end to neglect? I can almost see any reader bracing themselves for my next sentence which will, they expect, be about money. Except it’s not. Money is not the problem, and it’s certainly not the whole answer! Frankly, we managed to get it spectacularly wrong when there was more money in the system.

We live in a world where we commission accommodation in units, where people have packages of support, and where we account largely for time spent in cost per hour. After Winterbourne, we did a lot of navel gazing and produced a great many policies and a few reports, and yet abuse and neglect still happen. Sadly, this will continue until we stop de-humanising people. We do this through our language, when statistic-based management strategies blind us to the plight of individuals caught up in a poor service, and through the adoption of practices which turn people into packages. Indeed, NAS’s own response to events at Mendip House said, ‘People were not at the centre of what we were doing’, and Richard Handley died despite having a hospital passport, being on the GP’s learning disability register, and having some annual health checks.

Greater independence or self-direction of support is often and rightly seen as the holy grail of learning disability services but what about the journey? My husband and I have recently moved to another part of the country, and idioms are slightly different. As a good London boy, my husband will still greet someone by saying ‘alright’. However, here, rather than a perfunctory greeting, he often gets a full and sometimes frank appraisal of someone’s “alrightness”. When we receive this full reply, no one has ever told us about whether they have made their own bed or improved their ironing skills. They tell us how they are feeling, about the impact of their relationships, and generally give us an update on their happiness. None of these things are effectively recorded in outcomes monitoring sheets, and tenders to encompass such intangibles are difficult to write, and rarely attempted. Yet these are the things that matter.

A short while ago, when the Silent Witness story involving people with learning disabilities was being aired and discussed, I invited people to provide examples of good support and to celebrate the good in the sector. At the time, I wasn’t being terribly strategic; I just wanted to counter some of the negativity around. We got some great stories, and posts had warmth and humanity.
However, today, may be such actions are strategic; I’m not for a moment calling on us to forget that dreadful abuse can and does happen, but if we truly want change, we must admit that calling for something to stop is insufficient. We need to deliberately, corporately and individually strive for a positive culture change, and to understand how to embed this. We need to change our language into one that talks about people rather than bed-spaces or units, put happiness at the centre of our support requirements, celebrate the good, measure the right things, and be utterly unaccepting of anything that gets in the way of the best support possible.

Last week, I was discussing LDE’s Driving Up Quality work and thinking about how this can support people to give and receive great support. We discussed how its lack of rigidity is its strength, and I heard some great stories of how organisations had used it to sit down with people, work out where they could improve things and then take action. Recently, I had the privilege of shortlisting the Driving Up Quality awards. The best entries begun with a name and ended with details of how someone’s life had changed.